The Phoenix Zine

Coming Out of the Closet: Invisible versus Visible Chronic Illness

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Lately I’ve been researching my disease in an effort to determine what my future holds for me. For the past 25 years, I’ve been living with an invisible disability. Yes, I take medications and I have four different doctors plus a dietician, but mostly up until now unless you were with me for a day or two you wouldn’t be able to tell I have a chronic illness.

I have found this both a blessing and a curse. On the one hand it’s great because people don’t stare at me or treat me differently because I look just like they do, healthy and young. It’s interesting to see the surprise on people’s faces when they learn just how much I’ve been through and am going through.

The curse part comes when others expect me to be able to do everything they can do and I have to explain why I can’t. It also comes when I feel like I have to start every new relationship by providing a full disclosure of all the problems the person I’m interested in can’t see.

Mostly though, I’ve enjoyed the fact that my disease is invisible. I am a person who likes to watch other people as opposed to being a person who likes to be the centre of attention. I like blending in, and still shudder at memories of being little and so obviously sick, or being in the girls’ change room at school with the huge transplant scar on my chest.

So when I went to Target with my sister and our friend Dave, I was anxious. After a fantastic weekend filled with socializing and going out, I was exhausted. And to top it all off, I was in the early stages of a cold. For me, going to Target involves a huge expenditure of energy on my part. Walking up and down the many aisles leaves me breathless on a good day.

I knew I wasn’t going to make it. Usually, to help myself, I try to have a cart I can sort of use as a walker to steady myself and lean on when I get really tired. Since I was already tired, I knew that wasn’t going to cut it this time. So instead, I gathered up all of my courage, and asked to use a scooter shopping cart.

Being in a new situation, I was a bit worried the Target employees would question why I needed one and I would have to pull out my pacemaker/defibrillator card from my wallet to prove my need. I realised later those thoughts were ridiculous because it is in Target’s best interest to provide their customers with anything they need to spend their money in the store, but I was anxious.

Once on my shopping cart scooter, I felt awkward. I worried everyone was looking at me, wondering if I was a dumb kid on a joyride and whether I really needed the scooter. In this particular situation, however, the fears were all in my head. I don’t drive, so it took me sometime to get used to steering and my speed. But when I accidentally wedged the scooter between two aisles while trying to turn, two men helped me by lifting and straightening out the scooter for me.

At the time, instead of feeling thankful, I felt embarrassed. I loathe asking for help, and when others help me because of my illness, I tend to feel like I owe them greatly. I can tell those I love to ask for help my help when they need it, but I try my best to be self-sufficient, and when I can’t do things I feel bad about myself.

When I finished my shopping however, I felt proud of myself. For once I had recognised my limitations and instead of pushing my body to new heights of exhaustion, I respected my body and endeavoured to take care of myself while still doing what I wanted to do.

As my illness becomes more visible, what I hope I keep in mind is that it doesn’t matter what other people think of me. Although I hate when I think other people are watching me, if I need to do something for my health, like sitting down and resting while shopping at a mall, or mixing a protein powder in with my food or drink or taking medication, then I shouldn’t be reluctant to do that.

After all, it is what I do now that will determine my health situation in the future, not what other people think of what I do.

3 Comments

  1. As I read your story it reminded me of a year when i was having several back problems. I had injured my back and had taken a couple days off of work to try to let the spasms calmed down. I felt horrible because I felt that my employers could not understand that when i was talking to them that i was not groaning in pain and was still able to be cheerful on the phone. The following week my back improved but the chiropracter was wanting me to avoid any shifts that involved helping with baths or working with people who could suddenly seizure for awhile so that my back could continue to heal. I felt so uncomfortable requesting this from my managers and also felt that i should explain the whole situation to each employee that would be helping me with my modified shifts- still thinking that they likely didn’t believe me- because i was still laughing and being myself everyday. I remember my boss saying to me that he has backaches too but he pops a pill and is okay. I remember thinking..what type of pain fo yu have? you sit at your desk…I help many people bath and asist people to walk…is that the same situation? But other peoples attitudes especially if the are incompassionate- really do sting me! It is unfortunate that people don’t believe and respect each other from the very beginning. It is also unfortunate that I was so fixated on disapointing people that I did end up doing more than i should had too fast just because I did not want to burden others. I too- like being a helper but feel like i don’t want to make other people have to sacrifice for me. So now as i sit here writing you (still with a very sore back) I have grown to realize that really I am the only one who knows my body and it is up to me to advocate for it. There are days that I am holding the phone thinking…will I let this person down? will they undertand that I need this time to rest? It still causes me anxiety- but when i put things into perspective it i know that it is neccessary for me to trust in myself.

  2. I work in a setting with individuals who have developmental challenges. Some of these people have very physical, visual challenges while the others have cognitive and emotional challenges. I have noticed that when we are out in the community, some people give a second glance to the individuals with the visible exceptionalities; the other guys blend in with everyone else. Overall though, people in the community are very patient and kind to the guys. I don’t believe the second glance is even conscious. I think that people just need to process information of a unique nature. Staring, of course, is another matter. As for myself, I had a congenital hip dislocation and walked with a pronounced limp until I was in my forties. I felt very self-conscious and tended to hold back socially after grade school, due to some comments that were made to me that made me feel like I stood out. After I had a hip replacement, and the limp dissappeared, the self-consciousness did also. After feeling “different” for so many years, it was good to be like everyone else. It’s not going to last of course. Eventually, this hip will break down and I’ll have to have another replacement. I think going through this has helped me understand how important a concept inclusion is for ourselves and others. As my mother used to say “There isn’t an ill wind that doesn’t blow some good somewhere for someone.” Perhaps I’m better at the service I provide as a result of this experience. Thank you for sharing your story and providing a chance for me to share.

  3. Reading this makes me question why we are so afraid or even uncomfortable asking others for help.

    Some people view and feel like it is a weakness or a flaw. I think it can actually be a strength. Knowing yourself and needs and being able to identify them and have them met shows great understanding. Shifting the way people look at that is where the hard work comes in. We are taught from a young age to be independant and proud of it.

    I see no flaw in asking for support or help, only self awareness.

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